Some children will have mild reactions to eating a food they are allergic to. They may experience watery eyes, a runny nose or hives, and then quickly recover with a dose of Benadryl®. Still others may vomit and immediately feel better. Other children will experience anaphylaxis, the most severe of allergic reactions and end up in the emergency room receiving shots of epinephrine. Tragically, some children will die.
It is difficult to estimate how many people die each year from anaphylaxis. At one time, the Food Allergy & Anaphylaxis Network (FAAN) stated that approximately 200 people die from anaphylaxis each year in the USA from food allergic reactions. Yet those statistics have never been confirmed.
According to FARE (Food Allergy Research & Education), every 3 minutes, a food allergy reaction sends someone to the emergency department – that is more than 200,000 emergency department visits per year.
The Centers for Disease Control (CDC) reported that from 2004 to 2006, there were approximately 9,500 hospital discharges per year with a diagnosis related to food allergy among children under age 18 years. Food allergy is the leading cause of anaphylaxis outside the hospital setting.
Five Americans die each day from anaphylaxis (from allergic reactions to medicines, food and/or insect stings).
Families who don’t deal with food allergies on a daily basis may not understand the serious nature of food allergies. How can anyone die from eating one bite of a food? Is it really necessary to read EVERY label of EVERY food that is eaten? Why can’t your child eat the cake I made for the birthday party?
If your child is severely allergic to any food, strict precautions will have to be practiced if you want your child to not experience anaphylaxis. It only takes one misstep. And even with the best precautions, products can still be mislabeled, misunderstandings can occur and epinephrine autoinjectors can be out of reach. We do as much as we can to ensure our son’s safety by reading every label of every food he eats; not allowing him to eat baked goods that don’t have a label; closely monitoring foods eaten near him; carrying his EpiPen® at all times; and calling food manufacturers when we haven’t previously used the product.
Accidents can still occur, and for the food allergic child, such an accident can cause death. It is the reality of what we live with daily. We try to not focus on this; instead we try to gain an understanding of what we can learn from these tragedies. This is a preventable death, and our family does everything we can to stay safe and enjoy life.
In the April 2007 “Journal of Allergy & Clinical Immunology” research was submitted on the deaths of 31 individuals who suffered fatal anaphylaxis. Peanuts accounted for 17 of the deaths (55%); tree nuts caused 8; milk caused 4; and shrimp 2. Epinephrine availability is a key factor in the cause of death with only 4 of the fatalities having received epinephrine in a timely fashion. The location of the deaths wasn’t known in all the instances; however the most common occurrence was at a restaurant. The authors of the research, Dr. Allan Bock, Dr. Hugh Sampson and Anne Munoz-Furlong of FAAN, cite lessons to be learned as follows: (1) education of the medical profession to ask about food allergy, diagnose it, educate patients, and prescribe epinephrine continues to be inadequate; (2) patients’ education regarding diagnosis, allergen avoidance, symptom recognition, and discrimination between asthma flares and anaphylaxis remains very inadequate; (3) patients need to inquire in detail about ingredients and avoid eating desserts and bakery goods, especially when away from home; (4) patients’ knowledge of and compliance with the importance of carrying epinephrine needs improvement; (5) availability of epinephrine to emergency medical technicians and prompt dispatch of paramedics or emergency medical technicians who can carry and administer epinephrine needs to be improved in many locales; (6) school education including food preparation and staff training needs improvement; (7) public education about the potential fatal nature of food allergy needs to be disseminated; (8) restaurant education concerning the importance of accurate labeling and the full and complete disclosure of food ingredients must be stressed to the industry; and (9) evaluation by an allergist with the identification of the specific food culprits, and detailed education of patients and their families and friends may be lifesaving.
What can be learned from these tragedies for those of us with food allergic children?
It seems to me that education and awareness are the footwork that is available to us all. The more people are aware that my son has severe, life threatening food allergies, the better the chance that he will not experience anaphylaxis. Telling family members, friends, teachers, etc., about his food allergies is necessary so that they realize what they eat could potentially impact him.
Secondly, my son needs to be his own advocate. Sitting next to someone eating peanut butter isn’t something that he would do at 9 years old in the school lunchroom, yet as he aged he found this situation not difficult at all. Learning at a young age how to advocate for his safety was something we worked on daily. Lastly, our allergist has told us that children with a dual diagnosis of asthma and food allergies have much more likelihood to experience anaphylaxis. For that reason, more precautions will have to be practiced. For better or worse, my son will have to know what his date ate for dinner, and maybe even for lunch!
A letter in the June 6, 2002 issue of “The New England Journal of Medicine” found that kissing is not an uncommon occurrence creating an allergic reaction. Rosemary Hallett, M.D., an allergist at the University of California-Davis, and her colleagues reported that 5.3% of their 379 nut-allergic patients had experienced allergic reactions after kissing another person. Most of the reactions were mild, however a few did involve breathing problems, and one child had a life-threatening reaction. Four patients reported an allergic reaction even after their kissing partner had brushed their teeth!
Dr. David Fleischer, an Allergist & Immunologist at National Jewish Hospital in Denver, told Morgan and I that Morgan could have a reaction to kissing if his date ate one of his allergens within the previous 2 hours. To mitigate this issue, not eating the particular food (best choice!) or by eating some other food or brushing teeth to remove the allergen are all options for his date.
In a study by Dr. Hugh Sampson of Mt. Sinai Hospital entitled “Risk-taking and coping strategies of adolescents and young adults with food allergy“, it was found that only “61% reported that they “always” carry self-injectable epinephrine.”
The following are the stories of several food allergic children and teenagers who died from anaphylaxis:
- Sabrina Shannon’s Story
- Emily Vonder Meulen
- Katelyn Carlson
- Ammaria Johnson
- Natalie Giorgi
- Chandler Swink
- Joseph DeNicola
There is a full list of those we have lost to food allergies on the No Nuts Moms Group page here.
Here is a video made by Ana Pena, who created a film for her college senior thesis called:The Food Allergy Enigma: The Reality of Living with Fatal Allergies